Interdisciplinary research approach based on a mixed-methods design to explore patient altruism at the end of life: a study protocol.

INTRODUCTION: In the end of life context, patients are often seen as somewhat passive recipients of care provided by health professionals and relatives, with little opportunity to be perceived as autonomous and active agents. Since studies show a very high prevalence of altruistic dispositions in palliative care patients, we strive to investigate the concept of patient altruism in a set of six interdisciplinary studies by considering three settings: (1) in the general palliative context-by studying to what extent patient altruism is associated with essential psychological outcomes of palliative care (subproject 1a), how altruism is understood by patients (subproject 1b) and how altruism expressed by patients is experienced by palliative care nurses (subproject 1c); (2) in two concrete decision-making contexts-advance care planning (subproject 2a) and assisted suicide (subproject 2b); and (3) through verbal and non-verbal patient communication in palliative care settings (subproject 3). METHODS AND ANALYSIS: Subproject 1a: a cross-sectional study using validated and standardised questionnaires. Subprojects 1b and 1c: a constructivist grounded theory method aiming at developing a novel theory from semistructured interviews in both patients and nurses. Subproject 2a: a thematic analysis based on (1) audio-recordings of advance care planning encounters and (2) follow-up semidirective interviews with patients and their relatives. Subproject 2b: a qualitative study based on thematic analysis of interviews with patients actively pursuing assisted suicide and one of their relatives.Subproject 3: a conversation analysis based on audio and video-recorded interactions in two settings: (1) palliative inpatient unit and (2) advance care planning discussions. ETHICS AND DISSEMINATION: The study project was approved by the Ethics Committees of the Canton of Vaud, Bern and Ticino (no: 2023-00088). In addition to participation in national and international conferences, each project will be the subject of two scientific publications in peer-reviewed journals. Additional publications will be realised according to result triangulation between projects. A symposium opened to professionals, patients and the public will be organised in Switzerland at the end of the project.

"Collateral beauty." Experiences and needs of professionals caring for parents continuing pregnancy after a life-limiting prenatal diagnosis: A grounded theory study.

BACKGROUND: Caring for parents continuing pregnancy after learning about a severe life-limiting condition in their unborn is challenging. Most existing studies focus on affected families, whereas research on the subjective experience of care professionals is scarce. AIM: We aimed to (1) explore experiences and needs of involved care professionals, (2) obtain information about existing care structures, and (3) identify requirements for a structured perinatal palliative care program. DESIGN: Grounded Theory study using theoretical sampling. Data was collected by semi-structured interviews and analyzed following the principles of grounded theory coding and situational analysis. SETTING: A total of 18 professionals from 12 different services in Munich and surroundings participated in the study: 8 physicians, 3 midwives, 2 nurses, 1 each pregnancy counselor, grief counselor, chaplain, clinical psychologist, and undertaker. RESULTS: Several organizations provide support for affected parents, but inter-institutional communication is scarce. Due to the lack of a dedicated perinatal palliative care program, professionals make immense and partly unpaid efforts to support concerned parents. Providers experience "collateral beauty" in their work despite all the suffering and grief. This includes the development of a humble attitude and feelings of gratitude toward life, the feeling of having a meaningful task and professional as well as personal growth. Requirements for a structured perinatal palliative care program include: fostering peer support, ensuring regular supervision, and enhancing interdisciplinary exchange. CONCLUSIONS: Perinatal palliative care demands a high level of personal engagement but is experienced as highly rewarding by care professionals.

Patient altruism at the end of life: A scoping review.

OBJECTIVES: The concept of altruism is evidenced in various disciplines but remains understudied in end-of-life (EOL) contexts. Patients at the EOL are often seen as passive recipients of care, whereas the altruism of professionals and families receives more research and clinical attention. Our aim was to summarize the state of the scientific literature concerning the concept of patient altruism in EOL contexts. METHODS: In May 2023, we searched 11 databases for scientific literature on patient altruism in EOL contexts in consultation with a health information specialist. The scoping review is reported using the PRISMA checklist for scoping reviews. We used a data charting form to deductively extract data from the selected articles and then mapped data into 4 themes related to our research questions: how authors describe and employ the concept of patient altruism; expressions of patient altruism; consequences of patients' altruistic acts; and possible interventions fostering patient altruism. RESULTS: Excluding duplicates, 2893 articles were retrieved; 33 were included in the final review. Altruism was generally considered as an act or intention oriented toward the benefit of a specific (known) or non-specific (generic) recipient. Patients expressed altruism through care and support, decisions to withhold treatment or actively hasten death, and engagement in advance care planning. Consequences of altruism were categorized in patient-centered (contribution to meaning in life and quality of life), non-patient-centered (leaving a positive impact and saving money), and negative consequences (generating feelings of guilt, exposing individuals with low self-esteem). Interventions to encourage altruism comprised specific interventions, providing opportunities to plan for future care, and recognizing and respecting the patients' altruistic motivations. SIGNIFICANCE OF RESULTS: We identified heterogeneous and limited research conceptualization of patient altruism and its operationalization in palliative care settings. A deeper conceptual, empirical, and theoretical exploration of patient altruism in EOL is necessary.

Cognitive abilities and engagement in advance care planning among older adults: Results of a Swiss populational study.

Individuals often wait until the last moment to plan their end-of-life (EOL) care. Yet, decision-making capacity decreases with age, which could compromise engagement in and the effectiveness of advance care planning (ACP). Little is known about the association between cognitive abilities and the steps involved in the multifaceted process of ACP in older adults. The present study aims to better understand the association of global cognitive competence with engagement in ACP in a nationally representative sample of older adults in Switzerland. Global cognitive competence was measured via verbal fluency, immediate and delayed memory, basic calculation skills, and temporal orientation. Engagement in ACP included approving advance directives, having discussed EOL preferences, having a living will, and having a health care proxy. We analyzed data of 1,936 respondents aged 55+ from a paper-and-pencil questionnaire that was administered as part of Wave 6 (2015) of the Survey of Health, Ageing and Retirement in Europe in Switzerland using logistic regression models. Respondents with reduced global cognitive competence are less likely to have discussed their EOL preferences with others and to have a living will. Our results also indicate an interaction between age and cognition with respect to having a living will. Individuals with lower global cognitive competence in the oldest age group-adults aged 75 and older-are less likely to have a living will. Our findings highlight that low global cognitive competence can be seen as a barrier to engagement in ACP, particularly among adults 75 years and older. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

'Thank you for loving me': A qualitative study on perceptions of gratitude and their effects in palliative care patients and relatives.

BACKGROUND: Empirical studies suggest that gratitude positively influence the quality of life of palliative patients and relatives. However, the literature is marked by a lack of conceptual clarity about what gratitude is and whether it can bring about individual and social benefits. AIM: This paper explores how palliative care patients and relatives understand gratitude, how discursive representations of gratitude may affect their positions, perceptions and relations, and how to conceptualise gratitude in the palliative context. DESIGN: We examine 33 gratitude letters written by patients and relatives and 25 semi-structured interviews conducted as part of a pilot gratitude intervention study. We use a qualitative approach, thematic analysis, within a conceptual framework of discourse analysis. SETTINGS/PARTICIPANTS: Data were collected from 23 patients and 13 relatives recruited through three hospital palliative care services in French-speaking Switzerland. RESULTS: Participants articulate gratitude in five ways: (1) appreciating others; (2) love; (3) need to reciprocate; (4) appreciating the little things; (5) solace amid serious illness. While some of these representations are sources of positive emotions and outlook, wellbeing and hope, others may confirm self-perceptions of powerlessness and burden. These results support a tridimensional conceptualisation of gratitude in palliative care as source of individual benefits, valuing closest relationships and moral obligation. CONCLUSION: Our study suggests that gratitude is a key to a good (end of) life, whilst highlighting potential negative effects. It could help healthcare professionals to better understand what gratitude means to patients and relatives, which may facilitate awareness and fostering of gratitude in palliative care.

Advance Care Planning: A Story of Trust Within the Family.

As the family usually plays a central role at the end of life, the quality of family relationships may influence how individuals approach advance care planning (ACP). Our study investigates the associations of trust in relatives with regard to end-of-life (EOL) issues-used as a proxy measure of family relationship quality-with individuals' engagement in EOL discussions, advance directive (AD) awareness, approval and completion, and designation of a healthcare proxy. Using nationally representative data of adults aged 55 years and over from wave 6 (2015) of the Survey of Health, Ageing, and Retirement in Europe (SHARE) in Switzerland (n = 1911), we show that complete trust in relatives is related to higher engagement in ACP. Subject to patient consent, the family should, therefore, be included in the ACP process, as such practice could enhance patient-centered EOL care and quality of life at the end of life.

Overestimation of Survival Rates of Cardiopulmonary Resuscitation Is Associated with Higher Preferences to Be Resuscitated: Evidence from a National Survey of Older Adults in Switzerland.

BACKGROUND: Many widely used advance directives templates include direct questions on individuals' preferences for cardiopulmonary resuscitation (CPR) in case of decision-making incapacity during medical emergencies. However, as knowledge of the survival rates of CPR is often limited, individuals' advance decisions on CPR may be poorly aligned with their preferences if false beliefs about the survival rates of CPR shape stated preferences for CPR. METHODS: We analyzed nationally representative data from 1,469 adults aged 58+ y who responded to wave 8 (2019/2020) of the Swiss version of the Survey on Health, Ageing, and Retirement in Europe (SHARE) to assess the partial association between knowledge of CPR survival rates and stated preferences for CPR using multivariable probit regression models that adjust for social, health, and regional characteristics. Knowledge of CPR survival rates was assessed by asking how likely it is in general in Switzerland for a 70-y-old to survive until hospital discharge from a CPR performed outside of a hospital. Preferences for CPR were measured by asking respondents if they would wish to be resuscitated in case of cardiac arrest. RESULTS: Only 9.3% of respondents correctly assessed the chances for a 70-y-old to survive until hospital discharge from a CPR performed outside of a hospital, while 65.2% indicated a preference to be resuscitated in case of a cardiac arrest. Respondents who correctly assessed CPR survival were significantly more likely to wish not to be resuscitated (average marginal effect: 0.18, P < 0.001). CONCLUSIONS: Reducing misconceptions concerning the survival rates of CPR could change older adults' preferences for CPR and make them more likely to forgo such treatments. HIGHLIGHTS: Many older adults in Switzerland overestimate the survival rates of cardiopulmonary resuscitation (CPR).The study reveals that individuals with accurate knowledge of CPR survival rates are more likely to refuse resuscitation in case of cardiac arrest.Overestimation of CPR survival rates may lead to a mismatch between individuals' preferences for CPR and their actual end-of-life care decisions.Improving the general population's knowledge of CPR survival rates is crucial to ensure informed decision making and effective advance care planning.

Older adults' medical preferences for the end of life: a cross-sectional population-based survey in Switzerland.

OBJECTIVES: Medical decision-making at the end of life is common and should be as patient-centred as possible. Our study investigates older adults' preferences towards three medical treatments that are frequently included in advance directive forms and their association with social, regional and health characteristics. SETTING: A cross-sectional study using population-based data of wave 8 (2019/2020) of the Swiss component of the Survey of Health, Ageing and Retirement in Europe. PARTICIPANTS: 1430 adults aged 58 years and older living in Switzerland. PRIMARY AND SECONDARY OUTCOME MEASURES: Three questions on the preferences regarding cardiopulmonary resuscitation (CPR); life-prolonging treatment in case of high risk of permanent mental incapacity; reduced awareness (sedation) to relieve unbearable pain and symptoms. Their associations with individuals' social, regional and health characteristics. RESULTS: Most older adults expressed a wish to receive CPR (58.6%) and to forgo life-prolonging treatment in case of permanent mental incapacity (92.2%). Most older adults also indicated that they would accept reduced awareness if necessary to receive effective treatment for pain and distressing symptoms (59.2%). Older adults' treatment preferences for CPR and life-prolonging treatment differed according to sex, age, partnership status, linguistic region and health status, while willingness to accept reduced awareness for effective symptom treatment was more similarly distributed across population groups. CONCLUSIONS: Simultaneous preferences for CPR and refusal of life-prolonging treatment might appear to be conflicting treatment goals. Considering individuals' values and motivations can help clarify ambivalent treatment decisions. Structured advance care planning processes with trained professionals allows for exploring individuals' motivations and values and helps to identify congruent care and treatment goals.

Giving and receiving thanks: a mixed methods pilot study of a gratitude intervention for palliative patients and their carers.

BACKGROUND: Psychological research examining the nature and workings of gratitude has burgeoned over the past two decades. However, few studies have considered gratitude in the palliative care context. Based on an exploratory study which found that gratitude was correlated with better quality of life and less psychological distress in palliative patients, we designed and piloted a gratitude intervention where palliative patients and a carer of their choice wrote and shared a gratitude letter with each other. The aims of this study are to establish the feasibility and acceptability of our gratitude intervention and provide a preliminary assessment of its effects. METHODS: This pilot intervention study adopted a mixed-methods, concurrent nested, pre-post evaluation design. To assess the intervention's effects, we employed quantitative questionnaires on quality of life, quality of relationship, psychological distress, and subjective burden, as well as semi-structured interviews. To assess feasibility, we considered patients and carers' eligibility, participation and attrition rates, reasons for refusal to participate, appropriateness of intervention timeframe, modalities of participation, and barriers and facilitators. Acceptability was assessed through post-intervention satisfaction questionnaires. RESULTS: Thirty-nine participants completed the intervention and twenty-nine participated in interviews. We did not find any statistically significant pre/post intervention changes for patients, but found significant decrease in psychological distress for carers in terms of depression (median = 3 at T0, 1.5 at T1, p = .034) and total score (median = 13 at T0, 7.5 at T1, p = .041). Thematic analysis of interviews indicates that overall, the intervention had: (1) multiple positive outcomes for over a third of interviewees, in the form of positive emotional, cognitive, and relational effects; (2) single positive outcomes for nearly half of interviewees, who experienced emotional or cognitive effects; (3) no effect on two patients; and (4) negative emotional effects on two patients. Feasibility and acceptability indicators suggest that the intervention was well received by participants, and that it should adopt flexible modalities (e.g. writing or dictating a gratitude message) to ensure that it is feasible and adapted to individual needs and preferences. CONCLUSIONS: Larger scale deployment and evaluation of the gratitude intervention, including a control group, is warranted in order to have a more reliable evaluation of its effectiveness in palliative care.

Methods for informing people with amyotrophic lateral sclerosis/motor neuron disease of their diagnosis.

BACKGROUND: Amyotrophic lateral sclerosis (ALS), also known as motor neuron disease (MND), causes increasing physical impairment and disability. People with ALS/MND face huge physical challenges, and the diagnosis can be a source of great psychological distress for both people with ALS/MND and their carers. In such a context, how news of the diagnosis is broken is important. At present, there are no systematic reviews of methods for informing people with ALS/MND of their diagnosis. OBJECTIVES: To examine the effects and effectiveness of different methods for informing people of a diagnosis of amyotrophic lateral sclerosis/motor neuron disease (ALS/MND), including effects on the person's knowledge and understanding of their disease, its treatment, and care; and on coping and adjustment to the effects of ALS/MND, its treatment, and care. SEARCH METHODS: We searched the Neuromuscular Specialised Register, CENTRAL, MEDLINE, Embase, PsycINFO, and two trials registers (February 2022). We contacted individuals or organisations to locate studies. We contacted study authors to obtain additional unpublished data. SELECTION CRITERIA: We planned to include randomised controlled trials (RCTs) and quasi-RCTs of techniques for informing people with ALS/MND of their diagnosis. We planned to include adults (aged 17 years or over) with ALS/MND, according to the El Escorial criteria. DATA COLLECTION AND ANALYSIS: Three review authors independently reviewed the results of the search to identify RCTs, and three review authors identified non-randomised studies to include in the discussion section. We planned that two review authors would independently extract data, and three would assess the risk of bias in any included trials. MAIN RESULTS: We did not identify any RCTs that met our inclusion criteria. AUTHORS' CONCLUSIONS: There are no RCTs that evaluate different communication strategies for breaking the bad news for people diagnosed with ALS/MND. Focused research studies are needed to assess the effectiveness and efficacy of different communication methods.

"More life and more days"-patient and care characteristics in a specialized acute pediatric palliative care inpatient unit.

Only a few acute hospital inpatient units dedicated to pediatric palliative care (PPC) patients exist today. Clinical data on the patients and care provided at specialized acute PPC inpatient units (PPCUs) are scarce. This study aims at describing patient and care characteristics on our PPCU to learn about the complexity and relevance of inpatient PPC. A retrospective chart analysis was performed on the 8-bed PPCU of the Center for Pediatric Palliative Care of the Munich University Hospital, including demographic, clinical, and treatment characteristics (487 consecutive cases; 201 individual patients; 2016-2020). Data were analyzed descriptively; the chi-square test was used for comparisons. Patients' age (1-35.5 years, median: 4.8 years) and length of stay (1-186 days, median 11 days) varied widely. Thirty-eight percent of patients were admitted repeatedly (range 2-20 times). Most patients suffered from neurological diseases (38%) or congenital abnormalities (34%); oncological diseases were rare (7%). Patients' predominant acute symptoms were dyspnea (61%), pain (54%), and gastrointestinal symptoms (46%). Twenty percent of patients suffered from > 6 acute symptoms, 30% had respiratory support incl. invasive ventilation, 71% had a feeding tube, and 40% had full resuscitation code. In 78% of cases, patients were discharged home; 11% died on the unit. CONCLUSION: This study shows the heterogeneity, high symptom burden, and medical complexity of the patients on the PPCU. The high dependency on life-sustaining medical technology points to the parallelism of life-prolonging and palliative treatments that is typical for PPC. Specialized PPCUs need to offer care at the intermediate care level in order to respond to the needs of patients and families. WHAT IS KNOWN: • Pediatric patients in outpatient PPC or hospices present with a variety of clinical syndromes and different levels of complexity and care intensity. • There are many children with life-limiting conditions (LLC) in hospitals, but specialized PPC hospital units for these patients are rare and poorly described. WHAT IS NEW: • Patients on a specialized PPC hospital unit show a high symptom burden and a high level of medical complexity, including dependency on medical technology and frequent full resuscitation code. • The PPC unit is mainly a place for pain and symptom management as well as crisis intervention, and needs to be able to offer treatment at the intermediate care level.

"Life goes on": Perspectives on the will to live from residents of Swiss long-term care facilities.

OBJECTIVES: While there is a growing body of literature on the wish to die in older patients, there is little research about their will to live. Exploring the subjective will to live (WTL) offers valuable insights into the patients' resources and motivations, which could help improving geriatric palliative care. The aim of this study was to examine, in long-term care facilities (LTCF), residents' definitions of and factors influencing their WTL. METHODS: Twenty residents (mean age 85.8 ± 10.3 years, 70% women) of 3 Swiss LTCFs gave informed consent and participated in semi-structured interviews about their WTL. Interviews were audio-recorded and transcribed verbatim. Thematic analysis was conducted to identify recurrent themes (40% double coded). RESULTS: The majority of residents reported that they had not thought about the WTL. Nevertheless, they had no difficulty in describing it as innate in their lives. They spontaneously mentioned factors that contributed to their WTL, classified into 5 themes: (1) relationships - primarily with family and health professionals, secondarily with other residents; (2) living situation - the LTCF as a necessary place providing care, constant professional presence, and security, yet necessitates inconveniences such as loss of independence; (3) personality factors - positive outlook on life or spirituality; (4) engagement in routines - organized activities and individual daily routines; and (5) health status - primarily related to functional health. SIGNIFICANCE OF RESULTS: Examining WTL provides important insights into elements that are essential to take into account in planning care and promoting well-being in LTCF residents. The themes identified provide important starting points for improving life in LTCFs.

Perceptions and Knowledge Regarding Medical Situations at the End of Life among Older Adults in Switzerland.

Background: Perceptions and knowledge regarding end-of-life health and health care can influence individuals' advance care planning, such as the completion and content of advance directives. Objectives: To assess older adults' perceptions of medical end-of-life situations in Switzerland along with their accuracy and corresponding associations with sociodemographic characteristics. Design: This is an observational study. Setting/study subjects: A nationally representative sample of adults aged 58 years and older who participated in wave 8 (2019/2020) of the Swiss part of the Survey of Health, Ageing, and Retirement in Europe (cooperation rate: 94.3%). Measurements: Subjective likelihood of 11 end-of-life situations on a 4-point scale: very unlikely (0-25%), rather unlikely (26%-50%), rather likely (51%-75%), and very likely (76%-100%). Results: Older adults' perceptions of end-of-life medical situations in Switzerland were rather heterogeneous and often inaccurate. Study subjects overestimated the success of cardiopulmonary resuscitation, the utility of a fourth-line chemotherapy, of hospital admission for pneumonia for patients with advanced dementia, and for artificial nutrition and hydration in the dying phase, while underestimating the effectiveness of pain management in this situation. Less than 28% of older adults correctly assessed the likelihood of dying in a nursing home, hospital, or at home, respectively. Inaccurate views were more frequent in men (p < 0.01) and individuals with financial difficulties (p < 0.05), whereas adults aged 75+ years (p < 0.01) and respondents from the German-speaking part of Switzerland (p < 0.01) had more accurate perceptions. Conclusions: The wide variation and low accuracy of end-of-life perceptions suggest considerable scope for communication interventions about the reality of end-of-life health and health care in Switzerland.

The involvement of palliative care with neurology - a comparison of UK, Switzerland and Italy.

OBJECTIVES: To ascertain the involvement of palliative care with neurology services in the care of people with amyotrophic lateral sclerosis (ALS) in the United Kingdom, Italy and Switzerland, in particular the collaboration with and referral from neurology, the involvement in multidisciplinary team care and in the respiratory support of ALS patients. METHODS: In 2019, two online surveys were undertaken of palliative care specialists, using specialist groups of the European Academy of Neurology, European Association of Palliative Care and the Association of Palliative Medicine for Great Britain and Ireland. RESULTS: The respondents were specialist palliative care professionals, predominantly senior doctors, involved in the care of people with ALS. As the numbers of respondents from many countries were in single figures the analysis was restricted to the United Kingdom, Italy and Switzerland. The time of involvement varied, with early involvement commonest in the UK. Barriers to referral included neurologists not referring and financial issues, particularly in Switzerland. The reluctance of patients and families to see palliative care services was reported as less than 20% in all countries. Respondents were often involved in the care of people receiving noninvasive ventilation (NIV), in all countries. and with tracheostomy ventilation (TV), particularly in Italy. CONCLUSIONS: Palliative care services are often involved in the care of people with ALS, but the extent and timing of involvement varies. The use of clinical guidelines and education on palliative care for neurology services may encourage collaboration, for the benefit of people with ALS and their families.

Goals of care changes after acute ischaemic stroke: decision frequency and predictors.

OBJECTIVES: Little is known about the factors leading to a change in goals of care (CGC) in patients with an acute ischaemic stroke (AIS). Our aim was to analyse the proportion and outcome of such patients and identify medical predictors of a CGC during acute hospitalisation. METHODS: We retrospectively reviewed all patients who had an AIS over a 13-year period from the prospectively constructed Acute Stroke Registry and Analysis of Lausanne. We compared patients with a CGC during the acute hospital phase to all other patients and identified associated clinical and radiological variables using logistic regression analysis. RESULTS: A CGC decision was taken in 440/4264 (10.3%) consecutive patients who had an AIS. The most powerful acute phase predictors of a CGC were transit through the intensive care unit, older age, pre-existing disability, higher stroke severity and initial decreased level of consciousness. Adding subacute phase variables, we also identified active oncological disease, fever and poor recanalisation as predictors. 76.6% of the CGC patients died in the stroke unit and 1.0% of other patients, and 30.5% of patients with a CGC received a palliative care consultation. At 12 months, 93.6% of patients with CGC had died, compared with 10.1% of non-CGC patients. CONCLUSIONS: Over three-quarters of AIS patients with CGC died in hospital, but less than a third received a palliative care consultation. The identified clinical and radiological predictors of a CGC may allow physicians to initiate timely the decision-making process for a possible CGC.

'We Have Guidelines, but We Can Also Be Artists': Neurologists Discuss Prognostic Uncertainty, Cognitive Biases, and Scoring Tools.

INTRODUCTION: Ischemic stroke is a leading cause of disability and mortality worldwide. As acute stroke patients often lose decision-making capacity, acute management is fraught with complicated decisions regarding life-sustaining treatment (LST). We aimed to explore (1) the perspectives and experiences of clinicians regarding the use of predictive scores for LST decision making in severe acute stroke, and (2) clinicians' awareness of their own cognitive biases in this context. METHODS: Four focus groups (FGs) were conducted with 21 physicians (13 residents and 8 attending physicians); two FGs in a university hospital and two in a regional hospital in French-speaking Switzerland. Discussions were audio-recorded and transcribed verbatim. Transcripts were analyzed thematically. Two of the four transcripts were double coded to establish coding framework consistency. RESULTS: Participants reported that predictive tools were not routinely used after severe stroke, although most knew about such scores. Scores were reported as being useful in quantifying prognosis, advancing scientific evidence, and minimizing potential biases in decisions. Their use is, however, limited by the following barriers: perception of inaccuracy, general disbelief in scoring, fear of self-fulfilling prophecy, and preference for clinical judgement. Emotional and cognitive biases were common. Emotional biases distort clinicians' knowledge and are notably: bias of personal values, negative experience, and cultural bias. Cognitive biases, such as availability, confirmation, and anchoring biases, that produce systematic deviations from rational thinking, were also identified. CONCLUSIONS: The results highlight opportunities to improve decision making in severe stroke through the promotion of predictive tools, strategies for communicating prognostic uncertainty, and minimizing cognitive biases among clinicians, in order to promote goal-concordant care.

The Path Is Made by Walking-Mapping the Healthcare Pathways of Parents Continuing Pregnancy after a Severe Life-Limiting Fetal Diagnosis: A Qualitative Interview Study.

In Germany, research on experiences and care pathways of parents continuing pregnancy after a life-limiting fetal diagnosis is scarce. There are several recommendations but few structured programs. We aimed to explore experiences and needs of parents, reconstruct their care pathways, and identify requirements for a perinatal palliative care program. We conducted semi-structured interviews with 11 mothers and 9 fathers and analyzed data using the Saldaña's Coding Method. Codes were organized in templates to reconstruct care pathways. Pathways started with a suspicious finding prompting a referral to prenatal diagnostics. Parents experienced severe emotional distress during prenatal diagnostics due to scarce information, insensitiveness, and a perceived pressure towards abortion. As a result, they overlooked referrals to psychosocial counseling, generating a care gap. Most parents reached the decision to continue pregnancy without professional support. They then chose a trusted midwife or gynecologist as main caregiver during pregnancy. There were no regular referrals to palliative care, which mainly became relevant when the child survived. Our data indicate that a perinatal palliative care program requires early and comprehensive information, sensitivity, and a non-directive approach. Already existing support services need to be identified and connected through structured pathways, with a particular focus on midwives.

Attitudes of university hospital staff towards in-house assisted suicide.

OBJECTIVE: To investigate staff attitudes toward assisted suicide in the hospital setting in Switzerland. DESIGN: Cross-sectional study. SETTING: Two University Hospitals in French speaking regions of Switzerland. PARTICIPANTS: 13'834 health care professionals, including all personnel caring for patients, were invited to participate. MAIN OUTCOME MEASURES AND OTHER VARIABLES: Attitudes towards the participation of hospital health care professionals in assisted suicide were investigated with an online questionnaire. RESULTS: Among all invited professionals, 5'127 responded by filling in the survey at least partially (response rate 37.0%), and 3'683 completed the entire survey (26.6%). 73.0% of participants approved that this practice should be authorized in their hospital and saw more positive than negative effects. 57.6% would consider assisted suicide for themselves. Non-medical professionals were 1.28 to 5.25 times more likely to approve assisted suicide than physicians (p<0.001). 70.7% of respondents indicated that each professional should have the choice of whether to assist in suicide. CONCLUSIONS: This multiprofessional survey sheds light on hospital staff perceptions of assisted suicide happening within hospital walls, which may inform the development of rules considering their wishes but also their reluctances. Further research using a mixed-methods approach could help reach an in-depth understanding of staff's attitudes and considerations towards assisted suicide practices.

Knowledge Gaps in End-of-Life Care and Planning Options Among Older Adults in Switzerland.

Objectives: Good knowledge about end-of-life (EOL) care options helps in discussing and planning important aspects of the end of life in advance and contributes to improved well-being among dying patients and their families. Methods: Our study explores knowledge levels of EOL care and planning options and its sociodemographic and regional patterning using nationally representative data from respondents aged 55+ of wave 6 of the Survey of Health, Ageing and Retirement in Europe in Switzerland (n = 2,199). Results: Respondents answered correctly on average to just under four out of eight questions regarding EOL care options. Women, individuals with higher education levels, and those living with a partner showed a higher EOL knowledge score, whereas the score is lower among older adults (75+) and individuals living in French- and Italian-speaking Switzerland. Conclusion: In view of the significant EOL knowledge gaps among older adults in Switzerland, further education efforts on EOL care options are needed, with particular attention to the population groups most affected.